Stroke Experiences

[PurplePineapple1]

I'm blatantly posting this here for the traffic.

Husband had a triple heart bypass on Tuesday and suffered multiple strokes immediately after the operation. He has a Glasgow coma score of 12. I cannot seem to get any meaningful information from the hospital. He is mostly unresponsive. Has barely opened his eyes. Did have a good period yesterday of squeezing my hand on command and giving thumbs up. He is constantly holding his head and moaning. They suspect swelling in the brain.

What's going to happen? Why won't he wake up? I have to ring ITU 10 times a day just to get the most basic updates and I just want to know what is going to happen to him. Please help me :(

Note down the funny ones to keep you going!!

It was very distressing being on the ward watch other patients die/be aggressive/be completely bed bound and incontinent etc etc No one to talk to, interact with, actually do any kind of daily life physio.

Even not being allowed to eat proper food for 3 days was horrid.

I can't even imagine how hard that must have been.

He is much the same. Of the 6 men in his bay he is the only one not NBM. The only one who can stand and walk. The only one who can talk.

Hey Purple

So much of what you have written in the last few posts is similar to my dads experience in hospital.

Is there anyway at all you can get any private physio for him at home? It made such a difference to my dad- I can't even explain.

Also the no filter thing - I remember well! Try and remember the funny bits and keep smiling together. You're doing so well and he's so lucky to have you advocating for him ❤️

We had one lady that couldn't talk anymore and very aggressive 3 dying the rest just in bed with a couple that could watch TV but only if someone turned it on for them

Was Covid so no visitors unless on palliative care. Very long days and nights because I couldn't sleep amidst the noise and the lights and the 4 hourly checks.

My speech improved massively in the first 3 months and my ability to write and make sense (apparently I wrote complete nonsense whilst in hospital). Thank goodness for predictive text.

That does sound horrendous for him, my worry is that if he comes home you will get nothing (or v little)....unless you have the finances
So difficult as he is still fairly young and could still make some meaningful recovery

We do have a private physio in place for when he comes home.

I'm angry on his behalf tbh, he's missed the "golden weeks" where he could make improvements the most quickly

Whatever ever exercises physio gives him get him to do them much more frequently then they suggest to the maximum he is able to.

My friend had a number of strokes in her 20s and was told to get her will and care for DC sorted. Paralysed down her left side, couldn't talk well. She's a stubborn cow, she was back working as a dance teacher running her own school within 2 years. She went full out with her physio. Was in hospital for several months.

This is great to know. It will make all of the difference. I'm sure you can't wait to get him home x

I can't wait to get him home, I'm overjoyed. I'm also terrified how we will cope. I'm terrified of getting him up and down the stairs - we live in a 120 year old terraced house with stairs so steep you could ski down them. Physio are confident he will manage and adamant that making provisions for downstairs living will affect his progress.

I'm selfishly devastated that I've lost my husband. He isn't him anymore. I have to hope that will come back.

Of course there are no guarantees that everything will be the same, but he will be so much more himself when he gets home. It's also not selfish to feel like this - it's totally normal.

His confidence will improve and when he's surrounded by his own things and favourite people, his personality will still be there.

It's not an easy time. In fact, it's the hardest thing in the world - so make sure you're making use of all of the possible support you can. Groups, hospital staff, friends and family.

Things will get better, I promise ❤️

Will you have others around to help when he does come home? Atleast to begin with?
Have you got a date to work towards?

I promise it will get better too....hang in there!!

The thrill of having decent food and peace & dark at night! He will feel so much better.

So, by way of update, he is likely to be home Monday or Tuesday next week. I'm happy as can be. I'm also terrified.

I'm "allowed" to take him off the ward now and we've been to the pub a few times. It's next door to the hospital, nearer than the Costa coffee inside the hospital. We managed OK but his vision loss makes him literally a doddery old man. I'm frustrated, he gets frustrated. It's hard.

@PurplePineapple1 I posted a while back (icu nurse on the night shift) and have just managed to read through the updates. Your husband has made such progress. DC home can be a stressful prospect but you’ve got so much in place. If when he’s home you or he is struggling and think need more measures I’d get on to OT / physio as soon as possible. Take it easy on yourself and make sure to get carers allowance and anything else your entitled to. I’ve seen many many exhausted and burnt out husband / wife carers and it can impact their health so please don’t give absolutely everything and leave nothing for yourself xx

Hi @PurplePineapple1 I had a mild traumatic brain injury and post concussion syndrome in 2015, so I can tell you a bit about my experience with recovery etc but obviously it won't be exactly the same as your DH (but I can relate to the impact of an acquired brain injury).

I'm not sure I can write it all properly right now without being distracted by my 3 DC but please feel free to PM me if you want to chat.

Sending huge hugs xxxx

I haven't updated in a while and I've had the best part of 2 glasses of wine so I'm updating now 😌

He's been home 5 weeks now. The first 3 weeks were horrific. I can't put it into words. I understand now how people walk out of the front door and don't come back.

Things are improving a bit. I'm essentially his mother now, and I hate that. I hate him for it, I hate the situation for it. I've had to quit my job because we didn't qualify for help, or not enough help to make it possible for me to do my job. Yet, the last 10 days or so he's taken some steps that are improvements.

I'm exhausted. Feel like I'm failing him. Resentful. Worried. Tired. The lot!

Oh my gosh, I'm so sorry to hear it's panned out like that, what a dreadful situation. It sounds like you've absolutely stepped up for him though, in spite of running on -beyond-empty yourself. Just because you feel resentful and are not cheerfully doing every last thing you possible could does NOT mean you are failing him. You are doing what you can and quite frankly sound heroic.

Thank God for the small improvements. Long may they continue. Sending a massive hug.

@PurplePineapple1 You sound amazing! My DM had a stroke when she was not much older than your DH. I just assumed foolishly that she would be helped by the hospital and after discharge to recover as much as possible but found out very quickly that once you’re deemed to be out of danger you’re pretty much left to yourself.
Look after yourself first because your health is vital. I used to get frustrated because it felt like DM wasn’t trying hard enough to recover but because she had severe aphasia we couldn’t assess the cognitive damage. We came to realise too late that it was more a case of couldn’t than wouldn’t.
Give yourself permission to grieve for the partner you have lost. You still have him in some ways but he’s different and it’s no longer an equal partnership.
He should continue to make improvements for a while yet but life is going to be different going forward and that is something you will both have to come to terms with.
Do whatever you need to do to stay sane, prioritise you as much as possible and make sure your life is not just about caring for him. It will be hard and he will be difficult frequently because he will also be unhappy with the situation. I hope you can find enough joy together in the small things to make this huge change bearable for you both. You are doing brilliantly though and he is lucky he has you on his side.

I have thought about you at times and wondered how you were getting on. You're clearly a very strong woman, and I'm sure it is hard. Nothing wrong with being honest!

I hope improvements continue to be made and that life does get a bit easier as time goes by for you x

Thank you EmilyGilmoresSass

I haven't been great at updating this thread and I should have done because the people who posted on here honestly helped me. I'd read the posts at night when I couldn't sleep and they helped.

He's been home exactly 7 weeks and 4 days. He's improved, a lot, I can't deny that. But oh my fucking god the days are unbearable. We have nothing to do. No routine. No plan. No money. It's unbearable!

So sorry to read how hard it is.

What benefits have you applied for?

This is the hard part - there is improvement but the limitations are all to clear to see.
I know that you’ve looked into help but what would happen if you weren’t around? They couldn’t release him home without any support.
I know it’s a fine balance between being a wife “in sickness and in health” and the guilt around that. Is there anyone (adult child? Brother/sister?) who could advocate for you?
Sending you love and hugs.